Confession: I love higher education. I love the drive for discovery and explanation, the push for more people to know more about the way more things work or don’t work. That may be why I worked for four universities. I earned degrees from three of them, although I didn’t mix work with education.
I have a Masters of Health Sciences in Rehabilitation Counseling from the University of Florida. Now, before you excoriate me for procuring parchment from your alma mater’s arch rival, know that I went for the education, not the sports. I own nothing with a Gator on it. I spent college football season cursing the early-arriving tailgaters for hogging so much pavement I couldn’t get out of the parking lot and go home on Friday afternoons. A classmate of mine who used a chair–and competed in the 1996 Paralympics in women’s basketball–once called campus police because an RV not only illegally sprawled across three handicapped parking spaces, it also usurped the striped space next to her car, which was legally parked in the fourth handicapped space, so she couldn’t get into her car.
If you don’t know what Rehabilitation Counseling is, check out the National Rehabilitation Counseling Association. Like many of my classmates and like many in the profession, the academic studies not only well-prepared me to help others, they also gave me a set of tools for understanding and helping myself.
With fibromyalgia, asthma. and newly-acquired but not well-managed PTSD, I arrived at school in August 1995 with disability bona fides that made me eligible to embrace crip culture. Don’t freak at the crip label; it was coined and is claimed proudly by people with disabilities who are sick of being objectified as crippled, broken, damaged. It’s an empowerment label and perhaps no publication wears it more proudly than the in-your-face crip publication Mouth Magazine. I love its edginess, its irreverence, its serious love for everyone who isn’t perfectly able.
If you think crip isn’t hip, get a reality check by visiting the Smithsonian’s EveryBody: An Artifact History of Disability in America for a fascinating look at disability empowerment. Also look at Disability Studies Quarterly, a pioneering scholarly journal, with great pieces about crip identity, crip culture, crip empowerment, and all things crip. If you want to know even more, if you self-identify, check out some of my favorite disability bloggers: Disability and Representation, CP Shoes (Maria is a former student of mine and a professional I deeply admire), and The Colored Fountain. There are many, many more who embrace their disabilities, who are proud to be crip, and who want you to be proudly crip, too, if you’re in any condition that isn’t perfect.
When I graduated with my Masters degree, and a bunch of awards and honors, I became a crip with professional credentials, credentials I specifically sought to bolster my employability. I wanted to work on disability rights and fundraising to support disability advocacy and being a person with disabilities wasn’t impressive enough. No one takes you seriously unless you have some piece of paper that says you’ve passed multiple exams, written lots of papers, and paid a bunch of money to parade around with an ugly square hat with a 1970s draperies tieback dangling from it. That’s not a complaint; it’s just a statement of the way we are.
Choosing a thesis topic wasn’t too hard. I immediately was drawn to the topic of sexuality and disability. It’s a complex topic that ranges from the mechanics–how do we do that?–to the legalities–are they allowed to do that? Turns out, it’s a controversial topic, too. I found that far more scholars write about counseling people with disabilities regarding their employability than they write about counseling people with disabilities regarding their sexuality. To be fair, the profession first developed with the goal of helping people become employable first and then employed: rehab counselors were trained to work in each state’s Division of Vocational Rehabilitation. They don’t get into helping people become partners, spouses, family heads. In a money-driven culture, that’s sort of understandable. We care more about people’s monetary worth than we do about their self-worth. People go to jail for stealing your assets; they don’t go to jail for stealing your self-esteem, your cultural or your racial identity, your emotional well-being, your freedom to love and express that love with whomever you choose to love (on this last point, they don’t go to jail but you might, depending on where you live. How interesting is that?)
I never had considered before grad school the number of people right here in the United States who aren’t considered sexual, which means they aren’t considered whole people. Sexuality is a normal part of every human being: it has to be. Reproduction, at least to replace oneself, is a basic animal instinct: if the members of a species doesn’t follow that instinct, the species becomes extinct.
Now think about this: does anyone question whether or not you should have sex? Has anyone tried to prevent you from having sex, either to reproduce or to express desire or love? Have you been stripped of this very basic element of your humanity just because you are who you are? No? You’re privileged. For thousands of people with intellectual disabilities, severe physical disabilities, genetically linked disabling illnesses, and even mental illness, the answer to those questions is “yes.” The answer also is “yes” if you are not heterosexual, if the person or people you love are racially or even religiously different from you. Pile disability on top of sexual orientation, race, ethnicity and religion and forget your libido. I’d say screw your libido, but you’re told you can’t. That’s the problem.
It’s outrageous that so many are so busy taking over or taking away other people’s sexuality with laws, rules, prejudices, and practices. We say, “Oh, isn’t that cute!” when we see two people with Down Syndrome holding hands or even going to their high school prom, but then we punish them for having sex because they live in a group home and that’s against the rules. Seriously? Why is being sexual against the rules?
Not so long ago, say the 1960s and even the 1970s, people with mental illness or cognitive disabilities were routinely sterilized. It was practice to surgically remove people’s ability to procreate. For a chilling academic discussion of when and where and how eugenics programs proliferated with respect to people with cognitive and psychiatric disabilities, check out Ellen Brantlinger’s 1995 tome, “Sterilization of People with Mental Disabilities: Issues, Perspectives and Cases.” In the book, the author opines the following:
“Currently, many people may not readily admit that they actually do believe in some form of eugenics because of a worry that such ideas are politically incorrect. Although eugenics advocates are not dominant or very visible, there are remnants of old movements or starts of new movements today. And there may be wisdom to certain aspects of eugenics positions. Six grounds can be envisioned for restricting procreation: transmission of disease, unwillingness to provide proper prenatal care, nonmarriage, inability to rear children, likelihood of psychological or physical harm to children, and overpopulation.”
Now, this was twenty years ago, but twenty years ago was not a long time ago. It was when I was in grad school researching the issues of sexuality and reproduction and disability. According to the arguments in this book, I should have been sterilized: I was nonmarried and I had genetically linked, and thus could transmit, disabling conditions. Wow. The more I read, the angrier I became because it became more and more personal. It also became more personal as I worked with and became friends with more and more people with a wide variety of disabilities. I met people who had been sterilized, against their will in some cases or without their knowledge in others. (Peg went in for an appendectomy at age twenty and came to after having a hysterectomy. Why? She contracted polio as a kid and her parents didn’t want her to to “suffer” with periods and mood swings on top of being rejected by boys because she was “confined to a wheelchair.”)
Who was to say whether or not my friends and consumers with genetically acquired visual impairment or deafness should or shouldn’t have sex or have children? Who is to say which diseases are okay to pass on and which ones aren’t okay to pass on? Does celiac disease make the cut as acceptable to transmit to offspring? How about lupus or rheumatoid arthritis? What about depression or bipolar disorder? Dyslexia? ADHD?
I wrote the thesis and my professors urged me to submit it for the NRCA’s student research competition. I did and became a finalist. I got to travel to Little Rock, Arkansas to present the paper at the national conference. There were three or four of us presenting. The presentations were to finalize who won first, second, and third place: each place earned a certain amount of a scholarship. The other finalists presented outstanding original research on vocational rehabilitation topics. I was impressed with their statistical presentations, their correlated findings.
When my turn came, I started with a question: “How many of you have sex?” The room filled with laughter and conversational buzz. The next question silenced the room: “How many of you are allowed to have sex?” The third question wrinkled brows: “How many of you were sterilized without your knowledge or against your will because you have a disability?”
I then presented data on current legislation allowing eugenics, current practices and recommendations from the profession regarding sexuality and reproduction, and I presented a meta analysis of research testing parenting fitness and supports needed for good parenting by people with disabilities.
I didn’t win the competition. I came in second. I felt satisfied because I had raised the issue. I had represented for people with disabilities and I had given the people who work for and with people with disabilities something to question and maybe do something to change things for the better.
We all should question our beliefs and our propensity to think we know what’s best for other people.
The next time you have sex, be thankful that you can.